Summer has officially started now in NZ and in fact we did get some lovely summer weather.
We had our first BBQ of the season yesterday and discovered nothing worse than a cremated moth on the BBQ that has been unused for months (other years we discovered how decomposed food can get!!)
We invited a new family from church over, they have four young children - the eldest is 6. Their children were so enchanting, so interested in everything and played with all the toys in the playroom like they were meant to be played with. Their 6 year old daughter even arranged all the people and furniture in the dolls house so that a family was having tea.
It made us realise yet again how different our children with DS are. While these little children played, Noah spent his time colouring over the whole page of a colouring book with the colour purple (very carefully and taking a nice long time!) while humming tunelessly.
It is good to be reminded sometimes that it's not our parenting skills (or not JUST our parenting skills) that make it difficult to look after our trisomy tribe, but the problems that are part of DS in particular the lack of incidental learning and the rigidity of thinking.
The hospital has recently appointed a speech language therapist to help with feeding and she visited Isaac on Friday (I think she may have heard from the home care nurses that we have taken it upon ourselves to wean him). It was good to see him through her fresh eyes and she was obviously concerned about his teeth grinding and throwing everything, both of which are behaviours we've just learned to live with.
I set out a play picnic so she could watch him with food. I do mean to do this everyday but it is so messy and expensive that I hadn't done one for two weeks. I was very impressed with Isaac and I think she was too. He ate a bite of an after eight mint, two burger rings and fed himself from the bowl of baby rice and the bowl of pumpkin. He picked up one of the drinks but wouldn't drink it. He also fed his doll a little bit.
these were the positives, the negatives were flinging the doll across the floor into the middle of the picnic and deliberatly throwing foods including a messy pot of calciyum and all the spoons and drinks.
Unfortunately she had no real advice as to how to continue the weaning. I had put him back up to 350ml nutrini overnight and about 600ml water throughout the day, but really feel we should try to cut this down to encourage his eating and drinking.
On Sunday he ate so well that we gave him no nutrini overnight and today we're constantly pushing sips of water and food that's pretty liquid so I'm hoping we can just give around 400ml of water overnight. I've joined the tube fed kids webring and that has some tips for helping drinking.
I have also become a packet reader in the supermarket. I have discovered that weetbix has twice as many calories as baby rice and chocolate oreo cookies and white chocolate Tim Tams are packed with calories and not too tempting for me (unlike the mars sweets which I finished off after Isaac had tried one!)
Paul rented a rotavator (rotary hoe is the kiwi word for this but just seems odd to us) this morning to get our front garden ready for lawn and then this afternoon Paul and I took Noah to see the movie UP which Paul hadn't seen and loved. Our ex-daughter-in-law Abi was visiting Palmy for the holiday weekend and called in on Saturday to see us which was kind of her. We hadn't seen her since the marriage break up with Joe in December, so she hadn't seen our new house before.
My brother Jon from Australia phoned and it looks like he will have 17 of my family (including Paul and I) squeezed into his home on December 27th and 28th when mum and dad (from UK) will be visiting him along with my brother Nigel and his family (from UK) and my sister Caroline and her family (from Nelson). The last time we were together was for mum and dad's golden wedding three and a half years ago. Only my younger brother Stephen will be missing.
Saturday Summary for August 19, 2017
1 day ago